CVID and Cognitive Behavioral Therapy


Using Cognitive Behavioral Therapy to Deal with My Emotions

I often have emotions that I don’t know what to do with.

Numerous emotions. All at the same time.

I’m an adult and I’m supposed to know how to deal, right?

But this is all new to me. The old me (my 20 & 30 something self pre-illness and pre-diagnosis) didn’t deal with emotions.

I was taught not to.

I remember my grandfather telling me after I gave my grandmother’s eulogy at her funeral service that I was going to have to learn to control my emotions. (WHAT?!!!!) Yes, I admit it, I cried and totally lost it while speaking. Isn’t that normal? (To explain, he was an old German white male who was very controlling and opinionated.)

So, after that I tried to do what I was told. I denied my emotions. All of them. The joyous ones, the happy ones, the sad ones…ALL OF THEM.

Well, a fine fix that got me into. Now, when it seems like everything in my life concerning my health is going to hell in a handbasket, I’m an emotional wreck.

I also don’t like to burden my friends with my emotions. I mean they have stuff going on too and unloading on them sounds like whining to me.

Cognitive Behavioral Therapy (CBT)

So, I’ve been researching the possible beneficial relationship between CVID and Cognitive Behavioral Therapy (CBT).

The shitty part is after my CVID diagnosis in October 2017, I thought I was ok. I haven’t been great but I thought I was dealing.

Then, I found out my younger son Jace (9) has Subclass IgG Disorder, my older son Jack (13) has full blown CVID, I have basal cell carcinoma, and there were some irregularities on my right breast mammogram that have to be reviewed and possibly looked at via ultrasound.

My reaction-I had a total break down in my appointment with Dr. K (my immunologist). In front of Jack. In front of the nurses. In front of Dr. K’s scribe.


To Dr. K’s credit he talked me down. He’s big on me living a good life-the best life I possibly can. He makes me promise him to live happy. I’m trying, but you see why it’s hard for me right? (I totally know I’m whining here ok!)

So, back to CVID and Cognitive Behavioral Therapy.

Apparently, there are thoughts called scripts in my head that aren’t the thoughts of my authentic self at all. They are thoughts I adopted to survive in an alcoholic household i.e. “just stuff down those emotions Susan Alynne because I don’t want to cause any more trouble for my parents marriage-just tiptoe quietly;” thoughts I heard and adopted from the most important people in my life i.e. “you’re fat Susan Alynne and you can’t feel good or look good fat especially as a dancer;” thoughts I made up myself i.e. “I’m never going to be good enough but I’ll die trying.”

CBT Defined

Here’s an excellent read on CBT and the false or incorrect thinking patterns I have via The Positive Psychology website.

Did you read it? Do you get it? Is anyone else like this or is it just me? I honestly don’t know.

I recently learned I can STOP these thoughts. Here’s what Michael Wells, Life Coach and Co-Founder at the Brojo writes on Quora:

  1. Recognize when these thoughts happen. Often, at the moment when you feel compelled to do something self-destructive. This takes practice, you’ll get better at it.
  2. STOP, and realize that they are just thoughts. At first, the self-destructive reactions feel automatic- they aren’t, you do have total control. Just like seeing a TV commercial does not make you need to buy something, having a thought does not make you need to do something.
  3. Acknowledge that they are not your thoughts. Say it out loud if it helps, “That’s not my thought…”

Over time, you’ll start to notice that the same voices say the same things, and you’ll know who is speaking in your head. Soon, those voices may get names of people you know (sometimes more than one!).

So, I’ve been practicing self-destructive behavior. Yeah for me! Way to go!  No wonder I can’t “adult” most days. These thoughts are totally debilitating.

I’m going to try CBT though. Maybe I’ll even be able to find a therapist who specializes in CBT with chronically ill people like me.

I’ll start with self-acceptance, well at least in regards to CVID.

I am a Zebra.

I also love two little Zebras.

I also know all three of us Zebras have people out there that love us too.

Thank God for that.

Stay strong my Zebra friends.

Using cbt to cope with cvid

41 thoughts on “CVID and Cognitive Behavioral Therapy”

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    1. Yes, you are absolutely correct. The practice and use of CBT is an ongoing practice for me and you will probably read me fail at it over and over again on this site. I have good days with it and bad days. I guess it’s like anything else in life! It’s worth the work though!

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    1. Oh good! I’ve got a post coming out this week about my recent CVID-related issues (I know, I know…can’t wait can ya!) so hopefully you’ll be able to check that out! Write anytime! Thank you!

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    1. I’m so excited you are able to use some info from this post for your presentation! I know it’s been a while (I’ve been CVID-sick), but how did the presentation go? Please write anytime!

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    1. That’s super! Thank you so much! I apologize for just now responding but this CVID has had me “out of service” for a while. I’ll be posting about it this week-yippee! Write anytime! Take care!

  10. Hi,
    I have a daughter and two grandsons showing their CVID symptoms at the ages of (9) and (13). Before knowing that my grandson’s had CVID, my first reaction to my daughter’s diagnosis of CVID was disbelief. I lived in denial. How had my beautiful, intelligent, talented (she once owned her own dance studio) daughter have a disease that exhibited such life threatening and debilitating symptoms that she had her whole life go undiagnosed for so long, by so many doctors for so many years? I am irate to say the least! In fact, irate does not even come close to how this mother’s reaction to her undiagnosed and untreated forty some odd years daughter can be discribed without bomb blasting the entire medical profession!!!

    1. I am so grateful you found the information on my site valuable! That means a lot to me! You see, I have very limited energy due to CVID and it took me a long time to get even just this far with this blog, so thank you for your uplifting comment. Please write anytime! (ps-I’ve been “out of service” because of CVID lately but will be telling all about it in a post this week!)

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